Hi, I wanted to find out if there is anyone out there that has been diagnosed with Adenoid Cystic Carcinoma? I was diagnosed December 2002 and have since had 2 surgeries and have been thru radiation treatment. I'm 26 years old and just wanted to know if there is anyone that has dealt with or dealing with ACC.
This is the first time that I've visited this site. I was looking for some information on my diagnosis,when I came across your posted message. I was diagnosed with adenoid cystic carcinoma in Sept. 2002. I had surgery and have recently finished with radiation treatments. I am so glad to find someone who is going through the same thing. Anxiously awaiting your response. I hope that all is well with you.
New to this wonderful site, new to computers, too, but I am so glad you posted some info about ACC. I'm old at dealing with this condition--on year 19--and was just wondering if anyone else in the world had lived past the 20-yr.-mark that my drs. said was a record. I was 38 when diagnosed, a complete surprise, and my life changed totally that day. I had the huge surgery that you may have had and then healed remarkably well. I took the RT b/c I was told it would better my prognosis, so I had 6,000 rads cobalt to the face in a period of about 6 wks. Then I was sure I would die! I have no salivary glands, so have to carry bottles of water around with me everywhere, and have been given the name of "The Bag Lady!" Fortunately, I had lots of family in town at that time, and lots of colleagues from work to write notes of encouragement (missives of hope that were desperately needed at that time), visit me, help with my errands, and take me to RT treatments. After the first 9 of 30, I was on fire in the mouth and head. You may have had this symptom. My good news for you, after about a thousand dr. visits, various surgeries (depends on severity of case), hyperbaric oxygen treatments, skin grafts (which all peeled out), iron infusions (since you can't eat right, you become anemic), spending so much time in the dentists' chairs that I needed lamb's wool elbow pads, fixing all my teeth 20 times only to come to the point that I had to have them all extracted, and wearing a palate prosthesis that never really "fits" just right because the change in tissues is so dynamic, is that I am alive! My only child was age 11 when this happened to me, my husband left the family, and I had to retire from my job b/c I wasn't sure I would ever speak again. Not a good month, that Feb. of 1984! (ha) I can look back and smile now, but I was in constant and terrible pain while all the RT was going on--and then while much of the dental work persisted (about 10 yrs. in my case). My health ins. (and thank goodness I had group ins.) decided they would pay for the ca surgeries and rt, but not any of the dental--which was all caused by the rt. Many lean financial years, but sometimes I think it may have been the single most important blessing in my life! The gift of pain has made me so much more compassionate and the humility of having to ask for so many "payment options" to drs. showed me that people don't care how much you know until they know how much you care. I had about 17-20 physicians, but 2 wonderful ones who kept me going with optimism. Also, I had a beautiful child to raise, and on this Mother's Day weekend I could not be any more proud of him. He was the real "victim" of my cancer and had to help me do everything. He brought the ice packs for my face and the pain pills when I cried out in the night. He drew funny pictures when I lost another tooth and looked like a Halloween pumpkin. He was my real reason for fighting to get well. I also had the good fortune that I could follow my drs. orders and rest and eat--which is an ordeal, as you know. I lost my sense of taste (the rt denuded my tongue and tastebuds), smell (the surgery took my olfactory nerves, so we had smoke detectors everywhere) and some of my hearing in one ear. I believe you are at the beginning of a grand adventure, so don't give up! The years have been so rewarding to me and I am so grateful to be alive. Yet, I never take this for granted, am followed closely still, have annual CTs as a precaution, have more Rx bottles in my "war chest" than a person should, and love awakening every morning to a new day, never knowing what will present that day. I have been to the maxillofacial prosthodontists so much until I think I might be able to make a palate prosthesis ( or "obturator" as they call it). I have no teeth now, but the obturator appears to have teeth on it, so I only look twice my age. (ha) I drank a battleship full of iced tea after rt and even now I keep ice everywhere I go (small cooler in car). Some humor--I've been stopped for DUI, I've had officers ask me to remove the pros. (and a flashlight in my mouth shoots beams out of both nostrils, both ears, and you can see the back of the oral cavity, which most people have never seen.) I've been happy for all sorts of residents (drs.) to come take a look in my mouth b/c who knows who might help one day??I am thankful that chemotherapy would not work on my tumor b/c in 1984 you got really sick and lost all of your hair. Now things have improved with that treatment option. Remember, cancer is so limited--it can't take away love, friends, your spirit, hope, great memories--and you can choose to roll with the punches. The pain is inevitable, but misery is optional. I laugh at everything, even when I'm crying inside. My real purpose was to find out if I'm going to "buy the farm" pretty soon, but seeing a 26-yr.-old with the same ca made me feel that I should encourage you! Go for it! You cansurmount this thing, even prevail against it. I had to give up "hot or spicy" foods--pizza and BBQ--but found out that people really don't notice what you eat when you're in a crowd. By the way, my drs. have called it adenocystic carcinoma, cystadenocarcinoma, and squamous cell/ACC, so the diagnostic name may have changed over the years. I never smoked and drank a toast on New Year's Eve, so that was not the cause. Who knows a cause? I was the youngest person in my family to get cancer, and this is a rare one (maybe one per cent of all cancers?), but eventually all of my parents' generation of the family died with some form of cancer. It was amazing how many of them had a type that involved the esophagus, throat, GI tract, then some w/lung ca and breast ca. Maybe we have a predisposition to it?? If anyone out there in cyberland has lived longer than 19 yrs. w/ACC, I would love to hear from you. Meantime, best of wishes to any of you who are dealing with this debilitating type of cancer. Remember, it's one day at a time.
You sound like such a wonderful person. I was just reading the boards and read your story , and felt such a wonderful spirit flow from you. You made my day brighter and I dont have cancer that I know of,though I go in June to have what the doctor says is a saliva cyst removed from the inside of my cheek. I will pray for your continued health. You are such a blessing. Thankyou
I TO READ YOUR POST AND WANT YOU TO KNOW HOW YOU TOUCHED MY SPIRIT. OUR FAMILY HAS BEEN DEALING WITH MY HUSBANDS CANCER AND FROM THE PERSPECTIVE OF THE CARETAKER IT CAN BE OVERWHELMING. MY HUSBANDS DIAGNOSIS WAS 5 MONTHS AGO, HE HAD CANCER OF THE TONGUE AND TONSIL. 6WEEKS OF INDUCTION CHEMO THEN 10 WEEKS OF CHEMO/RADIATION. IT WAS INCREDIBLE HOW STRONG
AND FOCUSED HE WAS AND HIS DETERMINATION NEVER STOPPED.
THROUGHOUT THIS ORDEAL WE NEVER GAVE UP, AND THE BEST MEDICINE IS LAUGHTER, I KNOW THAT SOUNDS WEIRD BUT IT WORKS. HE IS FINALLY FINISHED WITH HIS TREATMENT AND HOPING TO TASTE FOOD AGAIN AND HOPING HIS THROAT HEALS.
THE GOOD NEWS IS HE IS WINNING, HIS BIOPSEY AND SCANS
CAME BACK LAST WEEK NEGATIVE. HAVING AN AGGRESIVE FORM OF CANCER IS DEVASTATING AND I WAS SO SCARED FOR HIM BUT IT HAS TAUGHT US AN IMPORTANT LESSON, LIFE CAN BE TAKEN FROM US AT ANYTIME SO LIVE IT WITH LOVE, COMPASSION AND JOY AND NEVER SWEAT THE SMALL STUFF!! THANKS FOR YOUR POST AND I WISH YOU ALL THE BEST.
Wow, Pat! You have been thru so very much! I almost gave up on hearing from people that are dealing with ACC. I was also really touched and encouraged by your message. Hello also to Beth. It is so comforting to know that there are actually people out there that have been thru/and are going thru the same ordeal.
Here is a little bit of my story....like I posted in my first message, I have had 2 surgeries. The first to remove my right salivary gland, and after testing the gland and realizing that it had been taken over by ACC, they recommended that I have a 2nd surgery to establish clear margins. They went back in and took nerves (still numb on my face) lymph nodes (my face is still swollen) and some muscle and tissue. They found a little more ACC the 2nd time around but said that it didn't spread anywhere that it had been known to spread. That was in December.
In January I started radiation treatments. 30 sessions. And unfortunately, I was not prepared for the side effects (my doctor did a terrible job of preparing me). They were horrid! Mouth dry as a bone, throat so sore I could barely breathe, lost my voice for 4 weeks.... and so much more. Beth, what were your side effects like?? I finished up about 10 weeks ago and I am feeling so much better... throat still sore, skin still dark, scar looks funky... but I am really glad that the radiation treatments are over with.
I have read that a lot of people experience Mets... does anyone know some actual statistics? This kind of info is hard to find online.
I just have a lot to ask and talk about... but I'm at work and have to get back to it.... please keep posting maybe we can really help each other out???
My Wife was diagnosed with ACC about 4 weeks ago. She has since had surgery to remove the salivary gland that was affected. Next is radiation. I have found a few sites that may be of interest if you are not aware of them already. www.rare-cancer.org It is run by an ACC survivor. There is a database there of people with ACC and other rare cancers. There are survivors past the 20 year mark. You might want to visit there for more info.
[This message has been edited by freddpa (edited 07-20-2003).]
Thank you all for your stories, I enjoyed reading them, they were very informative indeed.
I was diagnosed with ACC on June 11. I had facialcranial resection surgery July 3 and spent almost a week in the hospital. I have healed nicely and start radiation treatments Aug. 11, 2003.
I had part of the tumor in my tear duct, which they had to cut to get the tumor out. It was putting pressure on my eye, and after my surgery, my eye was almost closed from the pressure. I am still seeing double and they told me it will heal in time and go back to normal. Well, it has been a month, and it is a little better, but I still seeing double. If it isn't better by mid-Sept. by the time I finish radiation, I will have surgery to correct it. In the meantime, I have to live with this double vision and although it is very difficult, at least I still have my eye! At least I have recourse with surgery, and I am thankful for that.
By the end of Sept. I should be as good as new. They shaved my head to do surgery, so I have to wear a wig for a year or so, but I'll get used to it.
I feel great and I'm glad that the surgery is over. I was one sick puppy and had this cancer for over two years before it started to make me real sick. It is slow growing and has a tendency to metastisize to the lungs. I will get a body scan after radiation to see if that is the case. Also, it can metastisize to my breasts, but I've been checked and I'm clean. People don't die from ACC, so I'm very fortunate, all considered. I plan to live much longer than the 17 or so years they give you to live, I'm only 43 after all, and 60 is still too young to die, cancer or not.
All told, I lost my left maxillary sinus, only a big hole there now. I use Saline Nasal Mist, and it makes blowing easier.
Also, they removed my olfactory bulb, so I can't smell anything anymore, and my sense of taste is off as well. I can only taste very little any more, but I suppose I'll get used to it. It could be worse. I just hope that I don't have to look back and have to go thru this again, what a nightmare. However, all considered, it could have been alot worse, and I'm thankful it wasn't.
Long response. It's 2005. My wife is still doing well. She has nerve pain probably from radiation damage. But that isn't so bad considering the alternative. All scans are clear so far. This disease is tough. My prayers go out to all those affected by it, be it you or someone you love.!